Post navigation

Conversation with the paediatrician last week

Dinky was supposed to have an appointment with the paediatrician on Friday (two days ago), but due to the time of the appointment she would have to miss the whole day at school just for half an hour of me telling the Paediatrician how things are going and any problems we are having. I always hate talking about Dinky in front of her, as the medical thing is all about what is ‘wrong’. In 30 minutes I couldn’t get through all the awesome stuff with Dinky, but they need to hear the ‘issues’ so they can ‘fix’ it. It is what doctors do.

I asked if Dinky ‘needed’ to be there, I don’t mind her having the day off school, but she has only just started a new school. They said she didn’t need to be there.

So she (the paed who diagnosed Dinky in June) was going to phone at the time of the appointment to save me a trip to the hospital.

At some point earlier in the week I realised that to do the new 1:1/PA’s DBS (police check), the people who deal with them for our county needed to see her ID. Of course they were going to come at 11 on the same day the Paed was supposed to phone at 10.30. What could go wrong?

Oh yes, of course the Paed phones at 10.55 and the 1:1 and the worker knock on my door one after the other.

So I ask the Paed to hold on a sec, show the two ladies into the living room to go through the DBS and sort ID out ect, and tell them I’m on the phone with the Paed.

This was the first time I had spoken to her since she diagnosed Dinks in June, I didn’t really know what to say… ‘Erm, cheers for seeing what I see, Dinky is still autistic since the last time you checked’… What I did need was a letter to say that Dinky’s demand avoidance wasn’t conscious choice, that she doesn’t choose to refuse to do things. This would help in a number of ways, DLA, for professionals that don’t quite get PDA, and just so that I have it in writing.
The conversation about this really got me afterwards, and I wish I didn’t have the other people in my house so that I could concentrate and really get my point across.

The Paed said that her diagnostic report explained that the demand avoidance is a condition, I replied with ‘yes, but not all professionals understand that, they still think it is a behavioural condition’. She said that some in the medical community do believe PDA is naughtiness. Cue audible gasp on my part! Ignorance still reigns!
I told her it didn’t come across in her letter that the demand avoidance was part of her autism.

Then she said something that really has got to me

‘It might come across that you are coercing professionals’

Me? Really? I should, have said ‘I’m sorry, am I asking you to write something that isn’t true? So how is it coercion if it is just asking for your explanation in writing? If maybe someone from the CDC actually turned up to one of Dinky’s TAC meetings, then it would have already been documented officially the medical point of view regarding Dinky’s demand avoidance/PDA/autism’
But instead I said ‘but I’m not though, I wish I could just use a reward system or punishment to get Dinky to do what is needed, but it doesn’t work like that. When professionals say ‘try this’ they show they don’t understand PDA, so it would be helpful to have something in writing.’

Not that it isn’t good enough, but it doesn’t fully question the fact that this wouldn’t be needed if they actually wrote it down properly in the first place, and that even suggesting others might think coercion is out of order! I haven’t coerced anyone! All I ask is that people who know what they are talking about, write down what they see so that I have the medical backing I lacked when I was coerced into moving to the other side of our large town, coerced into moving her schools, coerced into trying a parenting style I knew didn’t work for my little girl! More than any of this… dinky wouldn’t have been treated so badly by her last school if the doctors had written a letter explaining why it was a provisional diagnosis and how long the assessment process was… No, it was all left to me to do. And when there is lack of understanding about my daughters DIAGNOSED condition, I want the evidence to prove them wrong straight away.

In the end she agreed to send the letter, and she asked how dinky was getting on at school, and in general.

There wasn’t much else to be said, as before all the appointments were to assess for autism/PDA and now she has the diagnosis, there isn’t as much to say that hasn’t been said.

People often get upset or annoyed when their children are discharged after a diagnosis of ASD, but I wonder what the use of seeing a paediatrician every 6 months is. It has been 8 months since Dinky’s diagnosis and the follow up appointment was a phone call cut short by immediate issues.
The paediatrician said she would see dinky at the end of the summer holidays… So in 6 months, to review the melatonin and discuss any other medication if Dinky gets a diagnosis of ADHD as a co-morbid.

Dinky is doing ok at school, she is starting to attempt numeracy lessons, which is great, although slightly worrying when she is convinced 8 plus 5 is 15! She wasn’t eating at school (which is really unlike her!), she has reduced the things she will eat, so the school have made sure there is always something she will eat on the menu and they try her with new foods, and after 5 days-she did try something new on Friday, although she didn’t like it, she at least tried.

She is a little more avoidant at home recently. The poor dog is pretty much crossing her little legs whenever I have to do careful battle with Dinky over getting ready and actually walking the dog.
It is really hard work and the avoidance hasn’t been this bad in a while. The only thing we don’t get is school refusal, which is good as the taxi ‘escort’ is an older lady who, because Dinky was still getting her coat on when they arrived, said that SHE doesn’t allow her grandchildren to watch TV when getting dressed. Yeah because that will work! Can you imagine the type of thing she would say if dinky refused…

Dinky had her first session with her 1:1 yesterday, they got on really well, which is really good! They played in Dinky’s room, chilled out in her sensory den, watched power rangers, dinky played on her swing and they played with some of Dinky’s toys.

Dinky hasn’t ‘played’ in her room in a long time, yet right now she is up there playing with her toys!

3 thoughts on “Conversation with the paediatrician last week”

It’s so refreshing to read about another parent suffering the ignorance of professionals when it comes to our kids. I’m fairly certain my son has PDA, which I will be blogging about ASAP, but right now I see no need for formal assessment as, where we live at least, all it would accomplish is a letter, no actual support. In fact, most services we have encountered have done nothing except worsen his anxiety. I admire you for standing up for what your child deserves!

The whole diagnosis thing is a hard one.
With Dinky, I don’t think just the ASD, SPD dx (still waiting for the ADHD assessment), would have gotten us very far in terms of education or social care. It took the PDA dx to help me to explain that while she talks (and she does, at length, about things which make little to no sense), and it wasn’t picked up until she was 4 (actually the two year health check picked up that she was behind on speech and language development- but they ‘lost her referral’), ANNND she started in mainstream (because that makes so much difference)… She still needs LOTS of support. My issue wasn’t that she is mild… It was trying to find someone willing to give us the time of day and assess her properly to find out for themselves!

If she didn’t have the PDA dx, then we probably would have still been looking at special school, but the autism unit she would have been placed in wouldn’t have been suitable in the end because they are big on direct short instructions… Which as you know, would be absolutely useless for a child with PDA. Which would have meant a third failed placement and she isn’t even 7 yet.

So she has to trek a little further to school via taxi, but she is in a school that totally gets PDA, and they are just finding their way with Dinky right now.

I don’t think there is a lot of support for any ASD other than the possibility of special school and social care funded respite and sensory equipment.

So I’m glad we have the PDA dx for Dinky, but any ASD support pretty much sucks and you are left to ‘get on with it’… But like I said in my post, I really don’t see what else a doc can do apart from sign off on melatonin! (which is of vital importance!)

I’m with you on the anxiety provoking professionals aka muppets! The first time Dinky saw her old social worker… The social worker sent her into a massive meltdown… Steep learning curve for professionals!

I can totally see where you’re coming from in that respect. We’re in a different scenario in that I pulled R out of school altogether. He went from a generally happy go lucky kid who occasionally needed to be helped lie on a soft couch and let off some steam by screaming ten minutes, to an anxious, not sleeping, not eating, self-injuring kid who was beyond my reach until we had him out of there for two weeks. Two weeks of trying to reassure him he was safe, and giving him the space to realise he could in fact do whatever he wanted (within reason). Over here in Ireland, on paper in LOOKS like we have a great support system in place for ASD kiddos, when in fact each part of assessment takes up to a year, then another 1 to 3 years for ‘early’ intervention to begin. The schools all use strict ABA approach, no middle ground. I tried for the entire two weeks R was in preschool to help his teacher help him, without stepping on toes, but she said if we didn’t like how it was done then either he would have to get used to it or he could leave the school. And this was the so-called best school in the town!

So yeah, I can definitely see how in your case, the diagnosis is essential. Sorry for the ramble! 🙂

Blog Stats

Pblogger

Thoughts on the crossroads of law, politics and society - for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….